Hi Its Snow Castles Here after 3 years.

[snowcastles]

Lots has happened in the last 3 years since I was last on here. Thought I'd write again just to let on where I am in my life living with APKD. I still have full use of my kidneys but the kidney specialist does not know why as they are now very large and distorted by the cysts. Many cysts have burst over time and I have had the pain of living with them and the discomfort as well under my ribs in stomach and my side and back.

Living with the discomfort has been something I have had realise on my own as pain and discomfort are not discussed by the specialists or doctors. They only will discuss the blood tests and the kidney function here in Australia so doctors visits are short and uninformative.

I have damage to three discs from falling down stairs three years ago and other areas of my back have disc damage so this is compounded by the discomfort of cysts. and heaviness and pain from kidneys. Varied specialists are reluctant to advise me or discuss this. The GP was anxious for me to see a psychiatrist who put me on depressants and other specialists put me on pain killers for my back that made me so tired and out of it I could not function.

Since last on here three years ago I haven't worked due to illness, became further depressed and anxious and overweight till a doctor explained that the antidepressants were contributing to weight gain, and was I unaware of how I could change my situation. I was in a fog each day not knowing what to do.

I also was having severe reactions to the high blood pressure tablets again although I did not know this was the cause. I had been on them for three years and it was a nightmare. I was having daily and nightly painful attacks of redness and swelling my face and body red sore and swollen, and terrible pain in my stomach .

All due to (angio-endema as diagnosed by a Immunologist and Allergist) and suspected Erythromelalgia (yet to be formally diagnosed. I was told to see a psychiatrist by my GP but then only prescribed antidepressants.

After eventually seeing an immunologist I now have medications for the angio-endema and know its not all in my head. . All of my doctor visits resulted in being told to take the anti-depressants which I did but they would not discuss my symptoms. I was getting no-where until I found out about the immunologist online and requested a referral.

I had also at this time dumped the antidepressants and pain killers. After a couple of months I gained clarity I realised I had been fogged up, depressed and chronically ill. I made a decision to get my daily life back on track.

Now I am gently exercising each day as often as possible (going for a walk), eating better, I rest when I am tired or in pain and am trying to set new goals in my life.

I'm more focused and happy and although I am in a lot of pain (I take panadol). find I have to get used to missing outings and many things I used to enjoy like study and work and the gym, outings and activities as I am too tired.

I am constantly tired as I don't sleep at night its hard to get comfortable to sleep. I am in pain with my legs and back and ribs so turn every 20 mins till I pass out. During the day I and lacking in energy but I have the meds for the angio-endema and my stomach has stopped swelling and there is less pain there which I am so happy about.

Once again I have to thank this website as I feel so much better for reading about the readers who contribute to find out more about APKD and all the support thats on there for people like me. Also it mentioned APKD charity website's information on APKD pain really put my discomfort and pain into perspective for me. Moving forward I am seeing a neurologist about my other spinal damage and treatment. But as me daily living and coping questions I have had about the symptoms of pain and discomfort regarding enlarged kidneys and cysts the APKD charity websites value here for me is wonderful. I have an idea what to expect going forward. I am so grateful to have read this information its like finding a rainbow.

Happy Easter 2019

Snowcastles

[scott123]

Will they not drain any of the cysts?

[snowcastles in reply to scott123]

Hi Scott,

I did have one drained recently but I was before then unaware of this option. I found out just before Christmas. Its not readily available and not often a referred by specialists. We also pay for this procedure and then get reimbursed by our medicare but there is quite a gap fee.

[scott123 in reply to snowcastles]

Is Tolvaptan an option for you? If your gfr is still good and depending on your age it should be an option

[snowcastles in reply to scott123]

Hi Scott,

Thanks for your replies so nice to hear back from another.

I went to see the kidney specialist about Tolvapan but in Australia one has to be at stage 2 of the disease before they will consider you. It is on a on a brand new trial that is available here alas (for stage 2 recipients) . Not sure if this is how it is in the UK or Canada. My GFR is still good at this stage. blood pressure only peaks every now and again.

I'm happy that the GFR is still good but would have jumped at the opportunity to slow down the damage which is pretty bad the kidney specialist told me its surprising the kidneys are still working fine. A specialist told me yesterday that the UK is so much advanced not to compare our level of care with here. But I'm optimistic that we can catch up sometime soon or I may try to move I love England would love to live there. How is it in Canada? I was wondering if it is as advanced as the UK?

Has anyone moved to get a better level of available care? We seem to have time with this disease to make plans even if we can't cure it. It seems getting on with life and living healthy is a good option as well as understanding as best we can about it.

Cheers

Snowcastles

[scott123 in reply to snowcastles]

Canada is as advanced as the UK, we have PKD specialists now in Ottawa. I started Tolvaptan at stage II, its not a cure but its much better than nothing at all. If your gfr is well maintained then you have time to at least look at options and it may well be a long time before you start to decline. There are trials in Canada for an artificial kidney that might be the best option unless another drug becomes available. In the meantime its best to take care of your health the best you can, cardio, diet primarily of fruit and vegetables and loads of water. You need to be at stage II for Tolvaptan as the studies included primarily later stages where progression had begun which seems not to be your situation and this is obviously a good thing, I don't think the condition or look of the kidneys matters that much, its more the volume and where the cysts occur and the damage they do.

[snowcastles in reply to scott123]

Hi Scott123,

Thanks so much for your reply. Im interested that they are developing an artificial kidney. It was on the news here. I have not been told anything about diet, drinking 'water' (until just weeks ago) and exercise. I don't drink anymore much for a number of years but now I never have it. I do drink coffee in the mornings so will try to stop this and I don't like meat anymore preferring fruit and vegetables and salad, some tuna or salmon. I don't like cheese and dairy much. All of a sudden I found I did not want to eat certain things I had always enjoyed.

I am so glad to have found this site as it has really helped me we don't get told anything much just monitored, which is something I guess but discussion is not encouraged by specialists and doctors here which I find disappointing. So grateful that you have replied, about why they did not put me on Tolvaptan yet, it makes me feel more positive about the future hearing about the artificial kidney and things I can do to help myself. I found out six years ago I had APKD when I had high blood pressure and UTI's all the time. I had terrible pain in my sides but was told that there was no pain symptoms with the disease. I hear on the website that most APKD patients experience pain. I"m just wondering why this is not acknowledged in Australia. Just wondering how did you find out you had APKD. Is the Tolvaptan helping you as you have obviously been on it for a long time.

Cheers

Snowcastles.

[scott123 in reply to snowcastles]

Hi Snowcastles

I experienced hematuria after lifting weights, they didn't think it was kidney related because my tests revealed normal levels of everything so I had to go through a cystoscopy (not pleasant). to check for bladder cancer only to reveal PKD. I Told them it was in my family but they didn't think it was possible, I really should have insisted on a CT scan first, it doesn't hurt to question your doctor. I have a great Neph and he put me on Tolvaptan immediately, so far I have no idea if its working for me but the results from studies show that it does slow the progression about 1/3. My gfr hasn't changed yet so I don't know if its helping this or not but I want to stick with it based upon the results of the studies. I am 57 so older than the usual that were involved in the studies but I would think that it shouldn't matter. Have you checked pkdiet.com? Its a great site and offers a massive amount of info on PKD. Alkalinity in the tanner rat studies showed great results but of course this is rats and not humans but drugs always go through testing with rats first so its not out of the question that alkalinity can be a factor. I drink 4-6 litres of water a day, this may have the same affect as Tolvaptan to reduce vasopressin, its not an easy thing to do but once you get used to sipping water throughout each day it just becomes normal. Did you doctor suggest increased water to you?

Cheers

Scott

[snowcastles in reply to snowcastles]

Hi Scot, How is the pain level were you able to still do most daily activities with enlarged kidneys or do you find that this inhibits you from many things, like work and going out. I'm very tired and hardly sleep due to pain and discomfort. I get a lot of UTIS and Liver infections too seems like every three months now. Doctor says don't eat out which I hardly do. At least now these infections seem to show up in the blood and other lab tests. I get hot at night so am throwing off the covers as well. I just wondered if its expected generally that we work and put the pressure on ourselves as well to keep up with what we used to think nothing about doing. I am so tired a lot of the time.

I'm going to ask for a sleeping tablet and take it once every third evening as I don't want to be fogged up with pain killers, antidepressants for pain and feel like a zombie at least since stopping to take these I can think clearly but I am so very tired because I struggle to sleep. I'm booked in for a sleep study. I hope this does not sound like I'm complaining I'm positive that talking on here can enlighten me to knowing how others adapt and get on with it.

Cheers

Trish

[scott123 in reply to snowcastles]

Hi Trish

I haven't experienced pain from it, I had some back pain prior to Tolvaptan but the doctor said it was unlikely disease related, I still lift weights but much lighter now, I still do everything I did before but have fatigue from getting up to pee at night (6-8 times a night), I take a nap in the afternoon and fall asleep right away, this is something that never happened before for me, I could never nap at all. Have you had your hormone levels checked? I think its best to check everything as we tend to blame everything on the disease itself. For me, switching my diet to no meat, low protein (ask for a nutritionist if you choose this) has made me feel much better. I take melatonin for sleep, I hate the drug sleep aids as they make me fuzzy the next day, Did you check pkdiet.com? A great deal of information there shared by all of us who fight the same battle. Have you tried Curcumin supplements for pain? It can be an effective anti-inflammatory (many studies to see online),

Cheers

Scott

[snowcastles in reply to scott123]

Hi Scott,

It was great to see your reply. I will look further into the diet on the PKDdiet.com website. I spent time reading up on there there's a lot of do's and don'ts I will print it out and put it on the fridge. I feel a bit ill now if I eat meat even chicken and fish which used to be ok. I wondered if I may have had hormone trouble years ago and saw a specialist. I had a cancer scare at the time and had all that removed. I got re tested after that and told my hormones could no longer be considered to cause any symptoms but thanks for mentioning it.

I have realised in the last few weeks I may have another infection they seem to be regular now so I will need to get back to the GP about it. I think I have a bit of a fever. I will go get some treatment and probably more lab tests for that as they always send me off for those.

I'm really thankful for the suggestions for pain and the diet and to hear your story. Thanks for sharing. I think probably hanging on to your fitness has kept you well too. I have read somewhere that pain studies say women seem to have more pain in some instances than men do which I think is odd but then we are all different. I'm glad that you are settled into your routine and doing well with self care and treatment. I guess thats what we all need. I'm aiming to also get myself on a better diet that I watch closely and my self into a better state of fitness. I was almost there recently but found I had attacks of pain during the day and night. Could be the infections that may settle down with antibiotics. I'll hop on here in a week or two and let everyone know how I go.

Cheers

Snowcastles